Announcement

Announcement Module
Collapse
No announcement yet.

Hi! 4xBEP done but lymph nodes didn't shrink

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Hi! 4xBEP done but lymph nodes didn't shrink

    Hi everyone, I've been reading on here a bit since being diagnosed in Jan, thanks for sharing all the specifics, it's been quite helpful.

    Now felt like the right time for me to share and seek clarification as my next stage seems a little more complicated than what I've done so far.

    I'm 35, was diagnosed in Jan this year at stage 3b, non seminoma (90% embryonal, 10% yolk sac). I had the orchiectomy, then 4 cycles of BEP started soon after which quickly dropped my tumour markers from 10,000+ (bhcg) to single digits and my abdominal pain (which was what got me to the doc in first place) disappeared.

    So chemo finished a month ago but the stomach pain is back and ct scans show that the lymph nodes in my abdomen haven't shrunk or maybe got bigger during chemo (originally the biggest clump was 7.5cm and there's more). Oncologist is saying RPLND is therefore likely and he has started discussing with urology.

    Im having a pet scan tomorrow which the Internet tells me will determine how much of these masses are viable tumour, teratoma, or necrosis, is that right?

    Oncologist suggested teratoma was likely but that didn't make sense as there was no teratoma in the original tumour. This is where I'm lost on how it works. Anyone explain it better? I'm worried about the RPLND because of how big the lymph nodes are and I know it's pretty uncommon surgery at my hospital.

    PS I'm also currently clueless on my small lung and collarbone nodes that pushed me into stage 3. Hopefully get an update tomorrow.

  • #2
    Can you feel the collarbone nodes?

    Comment


    • #3
      Nah, I've never been able to feel that one. Prefty small I guess. Im not even sure which side it's on tbh

      Comment


      • #4
        Are your markers still normal? If so, and the nodes have not shrunk and may have gotten bigger then, the possibility of a growing teratoma is possible. One may have teratoma in the abdomen despite not having it in the orchiectomy specimen. Having a PET scan, from my understanding, it no really of any value over a regular CT. I would ask the doctor but I am not sure teratoma would show anything on a PET scan anyway. With it being within 6 weeks of chemotherapy there may be an issue with false results as well. Again, something I would ask.

        I am assuming that you are in Australia? If so, I am not sure where you are but if it was me I would see if my doctor could discuss my case with Dr. Peter Grimison or Dr. Guy Toner. Our friends at the TCRC have contact information for them at: http://tcrc.acor.org/experts.html

        Let us know how your appointment goes.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        Comment


        • #5
          Thank you so much Mike, incredibly valuable info about the Australian docs (yes I'm in Aus) and questions to seek answers to.

          A week ago tumor markers were 3 and 2 (AFP and bhcg) which is the lowest they'd been so that's gotta be positive although I understand teratoma doesn't elevate tumor markers. Could the pet scan reveal viable tumour compared to teratoma? Or should there be no viable tumour due to normal tumour marker numbers?

          Comment


          • #6
            Originally posted by AussieDan View Post
            Thank you so much Mike, incredibly valuable info about the Australian docs (yes I'm in Aus) and questions to seek answers to.

            A week ago tumor markers were 3 and 2 (AFP and bhcg) which is the lowest they'd been so that's gotta be positive although I understand teratoma doesn't elevate tumor markers. Could the pet scan reveal viable tumour compared to teratoma? Or should there be no viable tumour due to normal tumour marker numbers?

            Teratomas can have moderately elevated AFP levels by typically they are thought to not have markers associated with them. I would have your doctor ask one of the other MDs if lesion progression with normalized tumor markers is indicative of growing teratoma syndrome. I would assume that they would say that surgery is the next step and not additional chemotherapy given that the makers are normal but I would obviously refer to them as I am not a physician. With markers normal, the pathology could possible find viable cancer in the RPLND specimens but I would not be overly worried about it personally.

            Mike
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            Comment


            • #7
              Hi AussieDan

              Since your original pathology had Yolk Sac in it, you may have some Teratoma that has since grown. I don't remember the specifics of how this happens but, I read a study that most people who have Yolk Sac or Teratoma in their orchiectomy pathology will most likely require RPLND after chemo is complete. I believe it may have something to do with the fact that germ cells form in the yolk sac of the fetus and yolk sac cancer cells can eventually differentiate into Teratoma. Again, I don't know if this is true.

              I had <1% Teratoma in my pathology. When I asked my Oncologist about doing a PET scan to see about any remaining lymph nodes she said that it wouldn't tell much or anything at all in terms of Teratoma. She didn't get specific as to why. I think PET scan is used to check for active cancer.

              Let us know how it goes

              Daniel

              Comment


              • #8
                You're right Daniel, the pet scan today was looking for active cancer. It didn't find any so that matches up with the normal tumour marker numbers.

                I did get confirmation today of the tumours in my abdomen and collarbone had grown a little since the pre-chemo scans so they're pushing ahead on the assumption that surgery is necessary and the tumours are likely to be teratoma.

                I ended up meeting a cardiothoracic surgeon who explained he was now involved as the placement of the tumour meant he would need to perform a thoracoaabdominal incision. Has anyone come across this with the RPLND? It means I am expecting to be cut open down the middle and around one side basically.

                I meet with the surgeon from urology tomorrow who has most of the work to do!

                Ear, nose, throat specialists will remove the node on my collarbone (it's more like neck really) once I'm done with the big surgery.

                Family are finding the news a bit difficult as we were expecting the cancer to shrink with the chemo given it was meant to be embryonal/yolk sac but I'm going OK and keen to get on with it.

                Mike, thanks again for the Aussie specialists names. My oncologist is making contact with one on my request.

                Comment


                • #9
                  I'm sorry to hear of the news for future surgery but if it is teratoma, you definitely want to get it out as it can transform to more difficult to treat cancers down the road. I am glad that your oncologist is reaching out to Dr. Grimison or Dr. Toner. I am not sure if you have lesions in both lungs but, if so, then that is something to discuss with them as well. Many times they can do one lung and if it is just necrosis, then that may be indicative of the same tissue type in the other lung. Again, just another question for your doctor to ask.

                  Keep us posted.

                  Mike
                  Oct. 2005 felt lump but waited over 7 months.
                  06.15.06 "You have Cancer"
                  06.26.06 Left I/O
                  06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                  06.30.06 It's Official - Stage I Seminoma
                  Surveillance...
                  Founded the Testicular Cancer Society
                  6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                  Comment


                  • #10
                    Hi Dan, do you mind me asking which city you live in? we are also in Oz. I hope the op goes well. Please keep us posted.

                    Comment


                    • #11
                      Mike, I didn't mention the lungs but most of the spots have gone since chemo. There is at least one still there that didn't light up under pet scan today, I was told they could cut it out with a bit of my lung during the big operation but would have further discussion on that.

                      Comment


                      • #12
                        I had growing teratoma after a primary with no teratoma and mostly EC and a little yolk-sac. My teratoma was a bit smaller than yours and it was in the typical RP landing zone so I had a traditional RPLND. I'm a little over a year out of that surgery now, and all is well. Based on all you have said, surgery sounds like a prudent choice.
                        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                        7/7/15: bHCG 56, AFP 42, LDH 322
                        7/13/15 - 9/18/15: 4xEP
                        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                        4/20/16: RPLND @ IU - teratoma only!
                        9/18/2017 all clears up to this date!

                        Comment


                        • #13
                          Thanks biwi, glad there's someone else that can back up my situation!

                          My update is I had surgery on my neck about 12 hours ago to remove the tumour and other normal surrounding lymph nodes. It took close to four hours but I have been told it went as well as they could have hoped and the mass is gone. I'm on a no fat diet for the next five days then they'll remove the tube from my neck and I'll go home.

                          Then two weeks later I have the big op - RPLND with extra incision on the side. The mass of tumours is large and there's lots of possible complications with the aorta and a range of organs. Im confident in the surgeons and know I'll be getting their very best effort to remove it all and limit the complications. I have been told though that retrograde ejaculation is almost 100% likely due to the difficulty of the surgery and everything else they're trying to save. I did sperm bank prior to chemo so I've got that option there. I'm sure the lack of visible semen will take some getting used to though! Oh well, I will live with it especially if everything else ends up OK.

                          Hope you're all coping as best you can and I will update again when I'm up to it.

                          Dan

                          Comment


                          • #14
                            Thanks for update. I know the removal of collarbone lymph nodes is often a difficult op. It's good that you made it through without any bigger issues like nerve damage etc. The RPLND should be more of a routine op and you should be ok. Good luck.
                            08-12/2015 Back pain, several epididymitis, fever, night sweats, went to many doctors but nobody thought I had cancer as I had nothing in testicles
                            01/2016 Retroperitoneal seminoma stage III, 28cm (tall) mass in retroperitoneum, big masses also in neck
                            02-04/2016 3*BEP
                            09/2016 Fever again -> relapse, cancer now in lungs too
                            09/2016 2*TIP
                            10/2016 1*HDC with stem cell transplant -> almost died to severe side effects, one week in ICU, 2nd round skipped
                            02/2017 RPLND (21 hours!) - one week in ICU again, found necrosis/fibrosis only
                            06/2017 All clear!

                            Comment


                            • #15
                              Thanks Stufax. I know RPLND should be pretty routine but I've been told that mine is not. Surgeon said it is the biggest and most difficult of the 100+ he has done although he did say separating conjoined twins would be harder!

                              But yours couldn't have been routine either... 21 hours!!?!?

                              Comment

                              Working...
                              X